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Month: February 2016

You may remember me; I wrote to you a while ago. I talked to you about all the different challenges you might have faced and the different emotions you might have experienced. I wanted you to know that you’re not alone. And I have some other things I want you to know, too.

I want you to know that it’s okay to be afraid, even long after your baby has come home from the NICU, happy and healthy. You might be afraid that at every doctor’s appointment you will receive bad news. You might be afraid that even though the doctors said your baby could come home, something will go terribly wrong. You have dealt with a big change, one you could not have predicted or planned for. It’s okay to be unsure about the next steps you should take. It’s okay to wonder why this happened to you.

I want you to know that you should have no regrets about anything you said or did during your time in the NICU. Not because you should do everything perfectly the first time around or not be sorry for a mistake, but because you have to forgive yourself. You snapped at the nurse that day, and she has forgiven you. You walked out in the middle of a meeting regarding your child’s future, and those people understand. I want you to know that it’s okay to forgive yourself after you have made it right. It’s okay that you said no more visitors that day because you just couldn’t talk to another person. It’s okay that you said the wrong thing to another NICU parent. I want you to know that you did your best. That’s all any of us can do. You did your best, and there might have been some mistakes and some good calls, and now it’s okay to stop being sorry.

I want you to know that the feeling you have of being overwhelmed is normal. Physical therapy, occupational therapy, discharge papers, pulmonologists, follow-ups – it’s too much for one person to deal with by herself. It’s okay that you feel like you can’t handle it. It’s okay to ask someone to help you handle it. It doesn’t make you weak, or unwilling to get the job done, or incompetent. You are strong. You are doing everything you can. It’s okay that it seems like everything you have to do will never get done.

I want you to know that it’s okay to feel like you are not up to the challenge of raising a kid with atypical needs. It’s all right that you feel like this was a mistake, that you are unqualified to be a mother to a little baby who needs so many things. It doesn’t mean you don’t love your baby, or that you won’t be a great mother. You will be. You are. But it’s hard to have a kid who is different. It’s hard to adjust when plans change suddenly and with no chance to prepare. It’s really hard. But you can do it. I know you might not believe me today, but you can do it.

Mostly, I want you to know that everything will be okay. It may have been three months since you brought your baby home, or three days, or three hours. Or three years. And still you are surrounded with the chaos that became your life in an instant, when you went from knowing the future to having no idea where to even turn for help. You still check on your baby in the middle of the night to make sure he is breathing. You go out of your way to avoid the hospital where your baby was born and spent the first months of his life. You feel frustrated and sad and then guilty that you feel that way, even though your baby has been home for a long time. Even though he is no longer a baby, but a toddler, or a big boy. Your child might not look like a preemie anymore – no one would know if you didn’t tell them. Or maybe your child struggles in some areas that make it obvious that he needs extra help.

No matter what, it’s going to be okay. It’s going to be okay. You think the memories of your days in the NICU, of watching your baby fight for life, of listening to a doctor prepare for the worst will haunt you forever. But they won’t. You think you will never overcome the fear that the NICU instilled in you when it comes to your baby. But you will. You think you’re never going to be able to move past that this, that this is your life forever now. But it isn’t. It will take time. It will take healing. But it will get better.

Happy birthday, little dude! Today are you are three years old. It’s such a cliche, but I can’t believe you’re already three. It doesn’t seem possible. Three is an official big boy age – you’re a big boy now! Which is good, because you have been saying “JOSHUA BIG” for a while now.

I always heard that each new age was the best one, and so far that has held true for you. I have loved watching your personality grow and change over the last year. You still love dogs and Jake the Pirate, but you have added a new love: Thomas the Train (and his entourage). You love Thomas. You have a Thomas bed. You have three Thomas shirts. You have a Thomas backpack and fifteen Thomas books and Thomas socks and Thomas stickers and Thomas everything. It’s pretty impressive how much you know about trains now – you can tell me which train is which and how some of them work; you can tell me which ones are steam engines and which ones are diesels. And some other stuff but I have already forgotten most of it. I’m sure you will remind me tomorrow :)

You have also learned so many songs this year! I love to hear you sing. You know the words and motions to so many great songs, and if you don’t know the words, you just sing louder. You love to march in time to a song, especially the Star Wars theme. And you do a great impression of Queen Elsa as she transforms into the snow queen. I think you have a future in rock and roll. You keep inviting me to sing with you but seem less than impressed with my skills. We can’t all be stars, Josh.

And when you aren’t singing, you’re talking. You talk about everything – what you’re doing, what I’m doing, what Thomas is doing, the time you saw the moon outside and the time you thought you heard an airplane but it was a helicopter, how you want to see a dog later, the time you did see a dog, how you think the potty is too loud, why Jenna needs to go take a nap, which blanket you hope you get to have for bedtime, when Daddy will be home from work, and maybe a few other things. You follow me around the house, clutching Thomas in one hand and “chawka milk” in the other, talking a mile a minute. Your little voice is adorable, and you have started to lisp when you say the letter S. It’s fabulous.

You’re also very honest. If someone asks your opinion on something, you will give it. Good, bad, in between – you just tell it like it is. But that honesty extends into following the rules, and trying to do the right thing. You are very into rules – sometimes I think you think I have a magical power to enforce the rules. I won’t let you read this for a long time, but – I don’t. You’re just a really obedient kid. But I think that works out well for both of us.

Joshua, I am so impressed with you. You have worked really hard this year. A couple of weeks before your second birthday, you took a few steps. Now, a year later, you are trying to run! And jump, and go up steps, and so many other big boy things. You have had to overcome a lot, but you’ve done it really well. You don’t always love PT or OT, but you still try your hardest to do everything they ask of you. It isn’t easy to struggle with so much, but you are one of the happiest kids I know!

You are so friendly, and so sweet. You offer Jenna your favorite Thomas toy when she is sad, and pat her head when she’s angry. You ask if you can “read” me stories, and you offer to bring me Diet Coke. I’m especially proud of that one. People always tells me that you’re such a great kid, and I believe it. You are. You are such a good kid. I know sometimes I can be frustrated with you, but I hope you know that I am so proud of you. I am not a patient person – see Daddy for patience – but I love you so much and I love being your mom.

Happy, happy birthday, Joshua. Or, as you say, Joshwah Evuhvelled. These three years with you have been incredible. I can’t wait to see what the next year brings.

I recently joined 2011 and got myself a Fitbit. If you are also behind the times and don’t know what I’m talking about, a Fitbit is a leeeeetle device that keeps track of your daily (and sometimes nightly) activty. You wear it on a wristband or clip it to your pocket, and it tells you to hurry up because you are sort of lazy. There are a few different versions – the fanciest ones track your sleep and your thoughts along with your activity; mine just tells me how many steps I’ve taken, the distance I’ve traveled, and how many calories I have burned.

Since I have two active, slightly insane children, I thought I was going to get a ton of steps without even trying hard. It turns out that isn’t how exercise works, and especially in this case, as Fitbit does not track many of the daily activities I participate in.